A LONG TIME TO BE IN PAIN
3
Jack : I woke up to an empty house.
Jack : Can you get doughnuts on your way home?
Prudence : I’m on my way. Will be there around 6:30.
Jack : With doughnuts?
Prudence : Yes, with doughnuts.
Prudence : I’ll get them at the docks before coming home.
Jack : What are you doing at the docks?
Jack : Wait, does Hot grumpy guy live on a boat or something?
Jack : Did you have sex on a boat?
Jack : If the boat sways too much, can you get sea-sick in the middle of sex?
Jack : That would be mortifying.
Prudence : Not on a boat.
Prudence : The docks are just a little detour.
Jack : So you did have sex. Just not on the boat.
Prudence : Be there soon.
PRUDENCE
When I open the front door of our house with a box of four glazed doughnuts, I’m not expecting to see Jack waiting for me on his electric wheelchair, six feet from the entrance, still wearing his pajamas, his shoulder length blond hair in the messiest bun I’ve ever seen.
The door barely closed, he wheels to stop right in front of me, grabs the box from my hand, placing it on his narrow thighs and studies me intensely, ignoring my shocked face.
“Oh. My. God,” he says with a wicked grin.
“What?”
“Have you seen all the bruises on your neck? Was Hot Grumpy Guy an animal or something?”
I roll my eyes and move past him towards our kitchen, walking right through our spacious living room. His chuckle follows me and he reaches me just as I turn the espresso machine on.
“You little minx. Having sexual intercourse outside of wedlock… Daddy dearest would be so disappointed.” I give him a pointed glare. “But at least it was with a member of the opposite gender… So I guess you’re not out of the will yet.”
My jaw hurts from the sudden gritting of my teeth. He can joke about it now, but he doesn’t fool me. When our parents disowned him after he came out to them at twenty-one, it took him months to manage a simple smile. It was even worse when our three other siblings also turned their backs on him for it. Now, it’s only the two of us against the world. Against his disease. Against the sad fate that awaits him—and me, when he’ll be gone.
I tried to talk to our parents once, when he had started to get worse two years after graduating from university. When our father had the nerve to tell me that it was God’s way of punishing him for his sins, I knew I wanted nothing to do with that family ever again. How can you believe that? How is any of this okay? Jack has been sick forever with a disease that was slowly attacking his muscles and nerves. They never were perfect, but in their own way, they did love and care for him. At least at first. I think. How can him being gay could change all that? How was I the only one vouching for him in our supposedly perfect family?
“I don’t want to be on that stupid will,” I mutter.
He doesn’t know that our dear father already threatened to take me off it. But if I have to leave my brother behind to get money? Forget it; I don’t want it. Their money doesn’t mean shit to me anyway. It might be hypocritical to say that now since they did pay for my university degree in full. But, oh well, look how I care. I’ve got my degree now, and I would have gotten it even if I had to take a student loan.
“Do you want a coffee?” I look for the cups at their usual spot but can’t find any.
“Yes please. Cups are in the dishwasher. It’s clean but I didn’t empty it yet.”
I grab two of them and press the button to start pouring. One sugar for him, none for me. He starts drinking while I put the clean dishes away.
“So… How was your night?” He asks with a grin, opening the doughnut box on his knees to start placing them on a small plate, and picks up one.
“It was fun.”
One eyebrow lifts and he stares at me, waiting. I clear my throat but don’t add anything. His fingers start tapping on the doughnut with annoyance, dropping flakes of sugar onto his pajama bottoms, and I roll my eyes at him.
I open my bag to take out the sketches, placing them on the table in front of him.
“Oh, wow.”
“I know.”
“I can practically see him be the cruel villain in a fantasy story,” he muses. “But turns out, he’s not really a villain. He was framed by the presumed hero who stole the love of his life and killed his beloved wyvern to bring its head to the king and get a reward. But the mysterious… Grumpy man, can’t give up his need for vengeance, and kills the false hero’s family, and even if he doesn’t mean to, the woman he loved.”
I roll my eyes. Jack loves his happy endings, but can’t help with the dramas and tragedies. He takes the sketch I made from mind, and looks at the title I gave it. “Flirty Late Guy, missing his ferry on purpose on a rainy Wednesday”.
“He runs, meaning to leave the continent, to catch a boat. But when he arrives at the docks, something tugs in his chest. A warning. He turns around, and heads for a tavern where he plans to get wasted for a bit, until the uncomfortable feeling eases. After a few ales, he goes for the money he keeps in a pouch at his waist but finds it gone, and sees the culprit running away. He goes for the chase, sobering up, and when he finally catches him… Her, he realizes. He knows her. She’s the false hero’s sister. But he can feel it deep inside. They were meant to cross paths. And…”
“Jack.”
He lifts his shining eyes with a jolt of surprise.
“Yes?”
“Do you need to write it all down and start categorizing and listing your new ideas?”
He nods vigorously. “I do.”
“Do you mind if I go to sleep for a couple of hours? I’m not working this afternoon nor tomorrow to take you to your appointment in Seattle. We’ll catch up this afternoon if you want?”
“The physical therapist comes at 2, and the nurse shortly after,” he says absent-mindedly. “And the pizza is in the fridge.”
“I’ll open the door for them and I’ll get you from your office if you’re still working.”
He nods again and grabs two doughnuts, stuffs one whole in his mouth and turns to wheel away.
I watch him go with a tight smile. He already made hundreds of plans like this one. Some of them turned into books, good enough to be published and become best-sellers, but most of them just sit in a desk drawer, waiting. He loves writing about romances, fantasy, sometimes sci-fi. But always a happy ending. “ Real life already sucks, if I make people cry, I want it to be happy tears ”. Sometimes I wonder if he enjoys the process of dreaming the story rather than writing it.
After gulping down the one remaining doughnut, clearing the dishwasher, and finishing my coffee, I take a long shower to clean the night away.
Casual sex was what I needed. Not really something I am used to doing—definitely a first—but it feels good to let go for once. My muscles are a little sore and I feel tired. Good tired.
It still feels weird to know that I had sex with a man—whose name I don’t even know—and won’t ever see him again. It probably won’t become a habit, but I can understand why some people have one night stands. It’s oddly freeing.
“Alright, what about him?” Jack whispers with a smile.
I narrow my eyes to study the old man sitting in the cold and sterile waiting room next to the door. I glance at Jack with a little frown. He knows I don’t like to play the game here, where most people are sick.
He only gives me puppy eyes and I indulge him with a sigh. Maybe I can give them a better life in my storytelling game…
“He’s got a pale band on his ring finger, but no ring,” I whisper back. “Maybe he has a torrid affair with the medical secretary at the front desk. Maybe he’s here waiting for her shift to be over, and that would be why he has a little bag with him.”
“An overnight bag. Clever, yes.”
He chuckles and warmth spreads in my chest. Despite his illness, my brother almost never complains and always smiles. Deep down, I know he must be in a lot of pain all the time. He wouldn’t have so much morphine and medical care at home if he wasn’t. But, for my sake or his own, he never says anything.
Maybe someday it’ll be all too much. Maybe he’ll just snap and tell me that he was never truly fine, and he was just trying to spare me. Me, his little sister. We never cared that we were not really blood related. We were both adopted as babies, and we grew up together. He’s the only family I have now. I’d sacrifice my unknown biological parents and our asshole adoptive ones if it could save his life, his beautiful soul. But it never mattered to him that he was the one who was sick, weaker. I’m his baby sister. And he would never accept to do anything that could be a burden to me. Even showing me how much pain he endures.
“What about the sparse bald spots on his head?” He asks with a little tilt of his head.
It doesn’t look like he is just balding because of age. I wouldn’t even call it bald spots, since there is barely any hair left on his head. As we are in a Neurologist waiting room, the first thing that comes to mind is probably chemo for a brain tumor. But that’s not what the game is about.
“He doesn’t know, but his wife found out,” I answer with a tight throat. “She’s been mixing his shampoo with hair remover for weeks now, just a little at a time so he won’t find out immediately. He’s still clueless.”
He puffs a laugh, attracting the attention of the old man. I avert my gaze, feeling my cheeks burn. I’m probably the same color of a tomato now. He casts us a disapproving look before leaning to grab a magazine.
“Page twelve is an article about erectile dysfunction,” Jack continues, eyes shimmering with barely contained laughter. “He needs all the help he can have now that he has to satisfy a younger woman.”
“That secretary is definitely not—”
“ Slightly younger,” he interrupts, narrowing his eyes, and making me roll mine. “And she…”
“Mr. Willow?” The secretary calls from the doorframe and Jack tenses slightly.
“Yes,” my brother nods.
“Dr. Garret is ready for you.”
I start to stand but Jack places his hand on mine. “Can you go to the front desk to do the usual paperwork first? Join me after?”
I frown but after a second, I nod. He gives me a reassuring smile, but something feels a little off.
He wheels down the corridor to the usual door and the secretary leads me back towards the front desk. We usually do the paperwork after the appointment… Why does he want me to take care of it now? Is there something wrong? Does he want to talk to the doctor alone? If so, why not tell me?
JACK
“Leaving?”
I stare at the doctor calmly, answering with a simple nod.
“You’ve been here for barely six months, and your symptoms are getting worse. Are you sure it’s wise?”
“You won’t do what I want you to do. There is no point in me staying here.”
I look around the familiar office. I’ve been coming here twice every month since we moved here, if not a little more for various tests. It’s surprising how all doctors’ offices look the same. The same sterile smell but wealthy furniture. One could think that they all buy the same frames for their photos. Could also imagine that they almost have the exact same families. Or is it the picture sold with the frame? Anyway, it feels like no matter where I go and what doctor I see, it’s always the same place. Spotless. Expensive. Cold.
One of the frames is lying picture side down on the corner of his desk and my head tilts in wonder. Did he have a fight this morning with his wife and hiding her picture makes him feel a little better somehow? Maybe he’s also having an affair with his secretary and found out she’s leaving him for the guy in his waiting room…
“Mr. Willow,” the doctor sighs, “I’ve told you when you asked that it’s a long process. You are in a lot of pain, but we believe that you still have a few years ahead of you.”
“What is the point of a few years if I have to be high on morphine 24/7 to be able to bear the pain?” I ask quietly, returning my attention to him. “You are the doctor here. You may understand in a hypothetical way the pain I endure constantly, but you don’t know. You don’t feel it.”
“You’re right. I can’t feel it… But I do know. Unlike your sister, who is still in the dark. Why not discuss all this with her? She has the right to…”
“I won’t, and neither will you,” I interrupt coldly. “It’s bad enough that I have to watch her sacrifice her own life and happiness to help me. I won’t burden her with what I feel. What I want.”
He fumbles with his pen, eyes searching mine. I don’t turn my gaze. He won’t help me, and I won’t stand here waiting for him to change his mind.
“Mr. Wi… Jack. No matter where you go, I don’t think you’ll find someone who will go along with your decision. Steinert Disease is rare, but for now, in your situation, not life threatening.”
“Then I will keep moving until I find someone who does, Luc, ” I answer through gritted teeth. “I can’t keep living like this. I don’t want to reach the point where I’ll be a burden no matter what. I want to go with as much dignity as I can.”
“You’re still young,” he says, his tone a little softer, but I shake my head. “I’m sure with the proper care you can reach thirty-five, or maybe even forty.”
“I’m thirty-one. I started showing symptoms about thirty years ago. It’s a long time to be in pain.”
“What about your sister, Jack?” My throat tightens. “Won’t she feel devastated?”
“I’m holding her back.” My hands fumble with the controls of my chair. “She might not realize, but she’ll do better when I’m gone. She’ll be sad, yes, but she’ll recover better if I go before she realizes how much pain I’m in. Because she will. Someday, all the morphine in the world won’t be enough to hide it.”
There’s a pause where I can just hear his frustrated sighs. I know he means well. I know what I’m asking is a lot and it’s not a decision easily made. But I don’t have the time to wait around. I’ll keep changing states, cities, until someone finally accepts to just end all of this.
“Jack, I’m asking you to think about all this. To consider talking with Prudence, maybe…”
“No. I won’t. And you can’t either.”
There’s a knock on the door and the doctor invites Prue in. That discussion is over then.
“Good afternoon, Dr. Garret,” she says kindly.
He smiles politely. He knows he can’t go over the Medical secrecy.
PRUDENCE
“As I mentioned to your brother, his condition is getting worse. All the muscles, even with all the physical therapy, are weakening. The last ECG was concerning.”
I nod slowly, anxiety slowly creeping in.
“Jack said you would be leaving soon,” he continues. “I can’t stop you, but I would suggest against it.”
“I think our next stop will be… California. I’m getting tired of the rain, aren’t you?” Jack asks, turning his face to mine with a broad smile.
“I guess… But, maybe Dr. Garret’s right? Why not do some more tests for a few weeks? See how they go?”
He shakes his head. “We can do those tests from California.” He turns back to Dr. Garret whose face is tight and lips in a thin line. “Please send my file to… Los Angeles. I’ve never been there. What do you think, Prue?”
“Wait, are you sure about this? Jack, if you’re…”
“I’m fine, sunshine.” He rolls his eyes with a grin. “I could use some vitamin D. And what better place to find some, than LA?” He winks and leans towards me until he reaches my ear. “To be clear, I’m not talking about the sun. I mean dicks.”
My eyes widens and I slap his thigh softly as he erupts into laughter. The doctor is staring at him with a weird expression on his face.
“Alright. I’ll email you a list of doctors and therapists. Once you’ve made your choice, I’ll send your file.”
“Perfect. Thank you.”
I’ve managed to stay quiet the whole way back home. Now? Now, I need to understand. Why did he want to speak to the doctor alone? Why did the doctor look at him with that weird expression? Did they argue about something? Is Jack hiding something from me that the doctor does not approve of?
“Why such a sudden rush?” I ask, fumbling with the chips packet on my lap.
“I’m not rushing.” He rolls his eyes, but doesn’t look away from the TV. “I’m tired of this place. I need a change of scenery.”
“But why now?” I press. “Why Los Angeles? You always say that with your taste in house it’s not worth renting in L.A. How long do you want to stay there? I know you have money with your book sales, and I can find something to do there. Maybe go back to work with the police and do composite drawings again, but…”
“I’m a little tired of moving, to be honest. So I’m thinking more of buying a house than renting. I’ll make a few calls. I’ve… Found someone that I knew back in college. His parents own a few houses next to each other, maybe they could sell me one.”
I frown. “You’d seriously buy a house there? Without even seeing it first? These kinds of things take time, you can’t buy a house in a week and move there. Be realistic.”
“Of course not,” he sighs. “We’d go there, rent a house, by the time we find something we’ll settle down.”
It’s my turn to release a heavy sigh and he finally glances my way with an arched brow.
“You’re being irrational,” I deadpan.
“I’m not,” he snaps and I flinch slightly. “I’ve been thinking about it for a while. You said you wanted a warmer place, and I agree. I am tired of moving around and I know that even if you never complain to me, you’d like to settle down somewhere eventually. Think about it, how about a nice waterfront house on the beach?”
“Are you listening to yourself?” I laugh hysterically. “Those houses cost millions! Especially in L.A! There are other warm states, why are you so set on Los Angeles?”
“I like California,” he shrugs, turning his gaze away.
“We’ve never even been there!” I nearly yell. “Not even to visit Nuri in San Francisco!”
“I’ll let you focus on clearing the house of our stuff and calling the moving company,” he says, ignoring my outburst. “Let’s say… Ten days. It seems reasonable. So you’ll handle the moving, and booking of the plane tickets and I’ll deal with the rest. I’ll find the new medical team there, I’ll find the house we’ll rent for a few months before we buy one…”
I frown as I interrupt. “I usually handle the medical staff.”
“I want to do it myself.”
There’s a long pause where neither of us talk and we just stare at each other.
“Why?”
A smile stretches his lips. “Well, not to criticize your skills in reading people, but Richard irks me and Giulia is always late…”
“What’s wrong with Richard?” I gasp with a frown.
“I feel like he talks more than he actually works. Not what I want from my physical therapist.”
“No he doesn’t,” I scoff, “he barely talks at all!”
“Right, that’s even worse,” he shakes his head. “Anyway, I’ll handle the medical care from now on.”
What is wrong with him today? Why is he casting me aside all of a sudden?
“Jack, I…”
“I’m a little tired,” he sighs before giving me a faint smile. “I’ll get to bed. We’ll talk tomorrow, and we’ll start planning.”
I stare at him, a little dumbfounded for a few seconds. He doesn’t move, waiting for me to acknowledge his words. I want to insist we talk now so I can understand. But I don’t. I can’t fight with him. What if something happens and it’s our last interaction? What if we go to bed angry at each other and when I wake up he’s gone? So I nod in silence, a knot in my throat, and watch him wheel towards his bedroom.